Tysabri: What Do You Want To Know?

Your attention to the Life with MS Blog has made us a visible part of the multiple sclerosis community and because of that, people will take our calls.

I had a long and in-depth conversation the other day with Dr. Carmen Bozic the Senior VP of Drug Safety and Risk Management for Biogen/Idec. She was very open in proffering information and answering all of my questions so that I could relate them to the community.

As I look to my pages of notes from this conversation, I know that we’ll have much to talk about in the coming weeks. In return for the time and attention I was afforded, I wanted to give something back to the people who are trying to make our lives better: feedback from our readers.

In reading through the comments on our other Tysabri blogs (and for my own purposes) it’s obvious to me that we all want more information when it comes to Tysabri and the instances of PML.

My mention of this lack of information was met with an empathy which bordered on sympathy. Seems that Biogen/Idec has been trying to figure a way to better get that same information for which we clamor to us. The thing is, they don’t know how best to do that.

Currently, the pipeline of information flows from manufacture to doctor. The expectation was that if we wanted to know something about our own treatment or the status of PML around the world, we would simply ask the neurologist prescribing Tysabri to us. From the comments I relayed, it’s pretty apparent that isn’t happening!

So, and I am taking their concern at face value here, I’m asking you how you would like to get your information about Tysabri and PML.

The current thought is to provide patient organizations, such as MS societies, associations and the like, with updated info which can be disseminated from there. I suggested that more of a pull vs. push method (as in a repository of information from which we can draw as we require) may be an option.

Our Tysabri blogs have been a place where people come to leave and read comments and questions. The MS community is an active bunch of patients and my feeling is that having a place where we can go to get information, rather than having it “fed” to us, would be preferable.

We’ve known for quite a while that members of the pharma community read our postings and your comments here. Now, you have a (more or less) direct forum to tell them how they can best serve us. Let’s take advantage of that!

So, please let us know what frustrates you about the current information flow, how you might see it “fixed” and what kind of info you’d like available.

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ABOUT THE AUTHOR

Trevis Gleason

Trevis L. Gleason is a food journalist and published author, an award-winning chef and culinary instructor who has taught at institutions such as Cornell University, New England Culinary Institute and...read more